Wednesday, June 5, 2013

When a special needs family goes to the store

When a family with special needs goes to the store
by Kelly Whistler

When a family who has a loved one with special needs, goes to the store, there are many things the family does to prepare for the short trip.  I would like to share with you, what we put into making our short trips a success!  This is meant to enlighten you of our world, and to share our life as the blessings we have in them. I invite you to see the entire picture, so you don't mistaken us for a family in despair.  To get to the point where you see us out and about, you need to know that we have put a lot of work into it and are proud that we got to that point to be with you!

Things we contemplate for our short outing:

1. Do we have a nurse to come with to suction during the drive?
2. Should we pack up the portable feeding pump, or wait to go in between scheduled feeding times?
3. Do we have enough formula not only for the amount of time we expect to be gone, but also a back up supply (in the event I lose some of it to a spill, or if we get into an accident and the hospital doesn't carry the formula, or if our trip out lasts longer than expected).  We cannot simply stop at a fast food joint, nor can our child deviate from her strict seizure diet.
4. Are there any medications due in the time frame we expect to be out of the house?  If so, we need to draw them up and pack them in ice if need be.  We have to label the meds, and pack them safetly to prevent spillage or getting into the hands of someone else.
5. We will work around catheterizing schedules, sleep schedules, medication schedules, feeding schedules, nursing schedules, dr appts, thearpy appts, work schedules, household maintenance (laundry/dishes, etc), sibling extra curricular activities, school schedules, DME (equipment and supply) deliveries, IEP mtgs, insurance appeals, phone calls, and general time constraints to go to the store.
6. Do the store hours work well with our schedules? Does the store carry our needed items, or will we need to venture into more than one store?  If so, this will mean more than one transfer in and out of the vehicle, another fight for a parking spot, and more supplies for the extra time out.
7. Does the wheelchair lift work right now, or is it stuck in a position where we can't get in/out of the vehicle? What will we do if it stops working again (for no apparent reason) and we are far from help?  We must pick a store close by, or make sure our help will be available to come help us.
8. Is there handicapped parking, and if so is there usually a spot open? We need a spot that allows for the lift to open on the right side of our vehicle. Hopefully others are respectfully and properly using the spots, so we don't have to wait until a spot opens up.
9.  Do we have our handicap Plackard, so we don't get towed or ticketed...even though the lift is clearly visable?
10. Is there enough battery charge for the suction machine, nebulizer, and pulse oximeter?  If not, do we have extra battery supplies?
11. Do we have the car chargers, or did one of the kiddos "misplace" it again?
12. Do we have enough portable oxygen, or are we waiting on a delivery from the DME?
13. Is the go bag packed well? (we will verify all the emergency supplies are replaced and available in the bag)
14. Is our child well enough to travel?
15. Is there an epidemic of a virus going around?  We cannot bring our child into a compromising ill environment because that could end his/her life or put him/her into another hospital stay.
16. Do I have money for the items, or is that money already allocated for one of the many over the counter medications that the insurance won't cover?
17. Is the store handicap accessible?  Do the doors have automatic open, or will we need someone to help us open the doors?  Are the aisles wide enough?  Is there an elevator?  Are the doorways wide enough?

Of course, with each individual care need, the list can go on, but this is a good starting point in planning our trip to the store.  Where you may be documenting first words, and first trips to the store in your child's baby book....we are marking the moments off a bucket list for our child and family.  <3

What YOU can do when you see us in a store:
1. Come up to us and acknowledge the effort we CHOOSE to put into a rare trip to the store.
2. Smile and tell us you see the spirit our child has, thriving even though the odds are stacked against him/her.  If we are in a store, it is likely that our child is having a great day and is at or near his/her best!
3. Ask us what makes our child so special (not "what is wrong with him/her") because we do not see our child as having anything "wrong", but rather as an extraordinary, loved one.
4. Ask before touching our child because we know our child's boundaries best!
5. Tell us about your similar experiences with the condition our child has because EVERYBODY likes to feel connected to someone in a similar journey!  You may be that one degree of separation that God has planted in our day!
6. If you must stare from a distance, please add a smile and maybe even a wink! We are proud of our little miracles, and like to know you are impressed with them too! :D
7. Invite your child to connect with our child, allowing them to ask questions.  Please do not hush your child, thereby eliminating the opportunity to share compassion, knowledge, and acceptance of individuality.  Who knows, your child may grow up to find a treatment or cure for our child's condition...simply with a seed planted that day!
8. Talk to our other children with us too!

When you see us in a store, YOU can celebrate with us!  We love to hear how well taken care of our child is, and how your heart warms when you feel the smile, or the spirit our child has sparked in your day.

Other things to take notice of: At any point in our day out, you may see us with a camera.  We bring a camera to capture the rare moment that our special needs child goes to a store, or smells a flower.  We want to capture the "normal moments", such as going to a store, as if they may never happen again...because there is a great chance they may not.  Every moment with us is reason to celebrate! If we waited for a "better moment" to capture, we may one day be sitting without the physical memoirs to smile and cry over when we are missing our miracle child. <3

1 comment:

  1. Beautifully said! I had the pleasure of accompanying my friend and her beautiful little princess with trisomy out to the mall for a much needed outing. I was so glad to be a part of that moment and happy to share the beauty and the miracle of her with anyone who took the time to look and/or ask about her :)